‘Stigma’ is a strange sounding word. It has various definitions, one being: ‘a mark of disgrace associated with a particular circumstance, quality, or person’.
It is often said that there is a ‘stigma’ associated with having dementia. This is one reason why people are reluctant to be open about their diagnosis, feeling that dementia is something to be secretive about and ashamed of.
With there being so much more awareness of dementia nowadays, those who work in the field – me included – are very used to talking about living well with dementia and embracing an asset-based approach, focusing on what the person can still do and making the most of strengths and retained abilities. We should, perhaps, realise that, although the word ‘dementia’ is now widely known, as a condition, it is still misunderstood and very much feared.
In an article in the Guardian in 2013 – Hospitals must tackle the fear and stigma around dementia – Consultant Geriatrician, Dr Chris Dyer said: ‘Many dementia patients say that from the moment they are diagnosed, those around them feel somehow rendered incapable. In reference to his own diagnosis with early onset dementia, the author Terry Pratchett summed up this reaction quite simply: People get embarrassed, lower their voices and get lost for words.
‘The reasons for such stigma are multiple, but the consequences almost always the same. As those living with dementia struggle to understand what is happening to them, they can become socially isolated from friends and family who are often just as afraid. Stigma is driven by lack of understanding, and the tendency to avoid issues we do not fully understand is all-too-evident when it comes to dementia’.
The situation is compounded by the hard fact that, in nearly all its forms, dementia is progressive, and there is no cure. This ‘medical model’ approach is still dominant and eclipses the more holistic perspective that can help families adjust more optimistically to a life with dementia.
When I went with my Dad to the GP after his small stroke last year, and asked for a referral to the Memory Service, the GP, very compassionately said, ‘I can refer him, but really, there is very little than they can do”. He was genuinely concerned about my father, I didn’t feel that this was a fob-off at all, the GP felt that the process wouldn’t bring about any benefits.
Our personal experience backs up the findings of a report published in 2014 by the Longevity Centre UK (ILC-UK) in collaboration with the Medical Research Council (MRC), Alzheimer’s Research UK and the Alzheimer’s Society. ‘New perspectives and approaches to understanding dementia and stigma’ highlights the impact of fear around dementia on those living with the condition, their families and carers and concludes that social stigma surrounding dementia is impeding early diagnosis, care and research into the disease.
How can this be changed?
Multiple strategies are needed to de-mystify dementia and promote alternative models of understanding.
One such approach that helps to re-frame this issue defines dementia as a ‘disability’. The social model of disability in relation to dementia puts people with dementia centre stage, recognising them as equal citizens with rights. They are the agents of change and their agency is valued and recognised. They are part of mainstream society and the range of barriers (social, attitudinal, physical and environmental) that oppress and exclude them are broken down.
The social model of disability is comprehensively described in ‘Dementia, Rights and the Social Model of Disability’ published by the Mental Health Foundation in 2015, which can be downloaded here.
Initiatives such as the development of dementia-friendly communities support this ‘disability’ approach, respecting the rights of people with dementia to access facilities and services in communities and putting measures in place to enable them to contribute to mainstream society and live with purpose. ‘Dementia Diaries‘, where people with dementia record their experiences of everyday life, describing the challenges they face and the activities that fulfil them, are shining a light on the disability model and the importance of upholding the human rights of people living with dementia.
Within the dementia field, and more widely, GPs are frequently criticised for ‘not listening’ and being reluctant to refer people for assessment and to services. Education is key; but we do need to ensure that we are tackling these barriers in the right way. We need to promote a holistic understanding of dementia in the context of the multiple models that explain it. Medical science has an important part to play, it will, in time, provide the gateway to pharmacological treatments and cure. How can we help GPs – and, indeed, everyone working in health and care – understand how alternative approaches can empower people with dementia, their families, social networks and communities to regard dementia as an accepted part of everyday life? The number of people affected, and the projected increase in prevalence in the coming years, make this an imperative.
I do understand why GPs are sometimes at a loss as to what to do. A shift in perspective is needed across the whole system. My experience with my Dad was that the process of assessment and diagnosis was entirely medical, and didn’t empower him in any way.
Please do get in touch with me to let me know of your experiences of GP referral and memory assessment services. We would like to feature examples of good practice in our services guide.